Title: The School Lives of Children and Young People with a Spinal Cord Injury
Authors: Abigail Knight and Pat Petrie with Patricia Potts and Maria Zuurmond
Institution: Thomas Coram Research Unit, Institute of Education, funded by The Back-Up Trust
This research study was carried out by the Thomas Coram Research Unit, the Institute of Education at the University of London between January and July 2008. The study was funded by the Back-Up Trust, an organisation working with spinally injured adults and children, as part of its Schools Project.
The main purpose of the study was to explore the experiences of children and young people with a spinal cord inquiry (SCI) in mainstream school. This was to inform the Back-Up Trust’s Schools Project, which aims to improve the quality of school provision for children with a spinal cord injury.
The study asked young people, parents and carers about their positive and negative experiences. It also aimed to investigate schools’ experiences of working with young people with a SCI and the challenges and factors that help them work effectively with these children.
A qualitative approach was adopted for the study. There were 82 interviews with children, young people, parents, carers and professionals, across all areas in England and Wales. Twenty-nine children and young people between the ages of 10 and 18 were interviewed: 15 boys and 14 girls. Most were of secondary school age and were white British. Twenty-eight parents and carers and 25 professionals were interviewed. The vast majority of the professionals were school-based and included teachers, teaching assistants and head teachers.
Returning to school after their injury was, for many spinally injured young people, an unsettling time where both the environment and people appeared unfamiliar. One of our interviewees, 14-year-old Sidra, said: “It was hard. I was scared. I didn’t know what to expect. I didn’t want to go back.”
Children felt better about the prospect of returning to school when they had been visited in hospital by school staff and friends. They also appreciated being sent “get well” cards. This contact ensured continuity and acted as a reminder that they were cared for and not forgotten.
Having the opportunity to visit the school to re-establish friendships and to test out disabled accessibility was also important to children and their parents in helping them to settle back into school.
Inclusion in school activities
Some of the schools visited for the study had physiotherapy rooms so that children could benefit from having physiotherapy sessions at school. However, some young people were missing out on lessons and social times to have physiotherapy. Many young people also reported feeling excluded at lunchtimes because the schools wanted them to leave their lessons early so that they could get to the dining hall before it became too crowded. Although this might have met health and safety regulations, leaving before the end of lessons sometimes meant missing the setting of homework and resulted in some young people feeling singled out.
Some young people with a SCI experienced exclusion from PE and sport at school. This was due to inaccessible play areas, such as fields and gyms, and a lack of adapted equipment.
Transport and school trips
Many of the young people and the parents interviewed had experienced problems with their local authority transport to and from school. These problems included being picked up very early and being dropped off late, or the taxi not turning up at all. The lack of flexibility with transport was also a difficulty experienced by many. This resulted in young people being unable to stay late for after-school clubs or to visit friends.
A small number of young people had more flexible arrangements. The driver would transport a friend or pick them up at a different time if necessary. In most circumstances having the same driver helped. This allowed a relationship to be built up between the driver and the family.
Most of the young people interviewed had experienced difficulties with going on school trips because disability accessible coaches were either unavailable or the cost was prohibiting schools from using them.
The role of the teaching assistant
The relationship between the teaching assistant and the young person with a SCI was found to be a crucial one, but not one without its challenges. Young people and their parents appreciated teaching assistants who were caring but not over-protective, and who were sensitive to the young person’s need to socialise without interference. Teaching assistants and social care workers have a broad role to play in supporting children and young people with a SCI, which includes practical tasks alongside listening and advocating.
Co-operation and information sharing
The study found many examples of an occupational therapist or physiotherapist playing a central role in the young person’s transition back to school. However, generally there were still tensions evident between health and education, especially in regard to the funding of specialist equipment. A clash of attitudes about whether a child’s educational or health needs should be prioritised was also evident, implying a lack of understanding by some professionals of the holistic philosophy underlying the Every Child Matters agenda.
Partnerships between parents and schools were generally close and positive. This was particularly apparent when the schools were not defensive about what they did not know, and parents did not blame them when things were not done as well as they would hope. Partnerships worked well when both parents and schools were open and receptive to learning, sharing information and expertise.
Independence and participation of young people at school
A wide range of factors determined the young people’s levels of independence at school. These included the accessibility of the physical environment, the availability of suitable changing facilities and the confidence of the teaching assistant in allowing the young person more freedom.
Independence at school was also determined by the willingness of the school to be flexible about health and safety rules and the consideration of each situation in the light of the child’s individual circumstances. One school, for example, gave a young person a mobile phone, which he could use in case of an emergency. This promoted his independence as it meant he could move around the school freely, using the lift and going to the toilet without assistance.
Some young people were regularly asked by the school for their views about disability issues as well as about their own experiences at school. One young person, for example, had been involved in the planning of a new building at school from the perspective of a wheelchair user. But for many young people there were no mechanisms at school for giving their views outside their annual review meetings.
Attitudes towards disability
Above all, the school’s ethos and its attitude towards disability largely determined the quality of the school experience for spinally injured children and young people. A positive attitude to disabled children greatly affected young people’s inclusion in whole-school activities and their independence.
A secondary school teacher summed up the importance of the school’s attitudes to disability: “This is a huge school but the barriers are few and far between because of the attitudes of the rest of the school that sees disability not as different or strange. It’s about inclusion and it’s about making sure the curriculum and the timetabling is inclusionary too” (special needs co-ordinator).Practice implications
Working in partnership The study highlighted the importance of education, health and social care professionals working closely to be able to meet the needs of the child or young person with a spinal cord injury. It is recommended that regular meetings take place to address issues such as accessibility, timetabling, school activities and other needs. Ideally these meetings should involve the young person, their family and professionals from the school setting and relevant social care and health agencies. These professionals might include the school’s special needs co-ordinator, teaching assistant, social worker, occupational therapist and physiotherapist. Meetings such as these should take place prior to a young person’s return to school after their injury and at other transitions, such as between primary and secondary school.
Recognising individuality Although the study highlighted many common themes and experiences, it was striking how individual many of the children’s experiences were. Some children, for example, benefited from having specialist equipment at school, such as an adjustable workstation, while others felt that this restricted their freedom and independence. Some young people appreciated having their wheelchair pushed by their friends, whereas others did not. An important conclusion from the study is that individual circumstances and preferences need to be assessed carefully by those working with disabled children. Again, this assessment needs to be carried out in close communication and consultation with the child or young person, parents and carers and other professionals.
The right to inclusion Underpinning all the findings of the study was the importance of professionals’ attitudes towards disability and young people’s right to inclusion. It is important to emphasise that all children and young people, regardless of disability, have the same opportunities as other young people, both inside and outside school. As demonstrated by this study, specific examples include the right to attend all school trips, be included in PE and sport at school and to be fully included in the social life of a school. It is not sufficient to say that disabled young people should have the equal right to inclusion. This needs to be complemented by careful forward planning, appropriate funding and the sharing of information about SCI and its implications.
Links and resources
The Back-Up Trust, tel: 020 8875 1805
Aiming High for Disabled Children: better support for families (May 2007) DfES/HM Treasury
Abigail Knight is a senior researcher at the Children’s Society
This article is published in the 2 October edition of Community Care under the headline “Children with a spinal cord injury returning to school”